Thursday, June 02, 2011

This heart wrenching video is the latest in a series by Michael Tutton of the CP exploring Canada's lack of decent, appropriate residential care for mentally disabled adults including people with autism disorders, downs and other intellectual disabilities.

7 comments:

Anonymous
said...

Somebody should step up and help those who are becoming adults or who are already adults affected by an intellectual disability. What is going to happen to all these children with autism when they grow into adulthood!

I'm not a parent, I use to work at a facility for the mental handicapped, most of them with the diagnosis of autism too. I will not say which facility or where in the united states, that is why I chose to stay anonymous. I quit after watching other staff members abusing these handicapped individuals, I'm currently in the process to take this to the press, because it was an outrage to see.

I would watch as these staff members would flick, push, trip, and handle them with too much force for them to what? stay seated for 5 minutes? Nobody sees this blatant excuse for humanity, it is preposterous! I got in a huge debate over this with one of my supervisors, after repetitively asking her to check the cameras herself as she did not believe me, she refused. The staff wasn't writing down each seizure activity shown, each behavior thrown, and was treating the individuals like rotting animals. It was sickening!

We need better places for these individuals and If I can give any advice to the families out there, it would be the following; Make sure the staff at any facility document each behavior, each seizure(if client has seizures), and check your child regularly for unusual behaviors or marks on their bodies. They should have a book or sheet coming home with them everyday, with at least 2-3 hour basis of how they are between those amount of hours!

I watched numerous times other staff would mark down great behavior, no seizure activity, went to an outing at the mall, all of the above was wrong. The family had no idea. One family in particular, everyday their child would come home exhausted, repetitively hitting his head, and spend the rest of his day pacing throughout the families house.

I would pick up the phone literally daily, seemed like everyday with the mother asking if her son had seizures, was badly behaved, or went on an outing, because of his unusual behavior.

Unfortunately he wasn't my client, and my job was to hand the phone to the staff member who was in charge of that young man all day. I sat there in disbelief, as the staff member would literally recite word for word what that he or she wrote on the piece of paper sent home. That wasn't what I saw, what I saw, was this young man suffering from small seizures throughout the day, then developing nasty behaviors, then restrained inappropriately. This young man is nonverbal and severely intellectually impaired, cannot express or elaborate what is going on. This is just one example of what I witnessed.

I couldn't speak up at the time, it was against our code of ethics(thou shall not start arguments with other staff or debate over what he or she saw differently). Can you believe that? That was my biggest reason to quit, I know it was my business to completely stay out of it, ignore it and move on. I couldn't my conscious was hurting too much. I contacted that family, explained everything, they pulled their son right out and get him self directed services, with a 1:1 aide and he is doing much better, less pacing, less head bashing, and overall a happier demeanor.

I stay in touch with that family, and it saddens me there are thousands of others who still have no idea what is going on with their children behind these facilities walls. I beg of you parents to dig, get every bit of information you need or want, your children deserve it!

We as a world need better settings, placements, facilities to help these individuals with all their unique needs, and fast before it is too late. I one day hope my story gets published so the world knows the truth. I came across this blog by accident, but I just hope somebody reads this. I wish the best for your son Harold.

Here in Toronto, we are seeing this in our small community of Muslims too. People with our religious and cultural views often expect that a relative or sibling will look after the disabled person. However life in Canada (or anywhere else in the world for that matter) is NO LONGER set up or lived that way. People are now finding themselves not only looking after their aeging parents but also their disabled middle aged siblings who were born and raised here. Many of them do not want to put their family members in institutions because of this fear of abuse, and also the fear of being treated like "one of a herd" you know. Their religious and cultural values can only be cared for if the person who is assisting them develops a relationship with them - just as the L'arche lady in the video said. Young parents like me often don't think this far, because we are often so caught up in the treatments etc, but everyones time runs out eventually.

The situation here in Canada is beyond desperate for adults with autism. Our son is seven and we have started the search for his home after we leave this world - bottom line: there is nowhere for him to live in this nation unless privately funded (at least not where I would even remotely accept). We have gone to Community Living and they do not have autism in their mandate, they support only downs and fragile x. Our international treaty signing means absolutely nothing, there is no law to support it here so it means nothing - in Auton v BC the Supreme Court did not even refer to any international treaty or law thus proving it means nothing. The case in NS of the young man locked in a room and having to use the washroom in the corner is sadly the best case scenario we have in this nation today. That the centre made a public apology shows there is no legislative support for adults with autism - that is, there is absolutely no liability to the disabled for this abuse in Canada so a public apology is freely offered. From my friends in Sidney I hear that this young man was rescued from this hell by a whistle blower (who should get a medal), much more than one person there knew what was going on. In the US there would be a prison term and definitely a huge financial lawsuit - here we just say "gee, real sorry (read: sorry I got caught), I will try better". Even though we are confident our son will be able to live semi-independently this issue keeps me awake most nights. We have very close friends whose son is in his teen years and his affliction is significantly severe (16, nonverbal , no means of communication at all, significant self injury behaviour, digestive health issues, and very challenging behaviour) – his future keeps them up crying most nights (even with these challenges the love and support they give their son makes every saint look like a sinner). Sadly, the more severe the condition the less the support or support is so inadequate it amounts to abuse (see the case of the NS man above).

As some people might know, this week here in the UK we have had quite an expose of some of the abuse in the adult social care system. I attach a link to the various interest in this on the BBC but must warn you that some of the scenes are quite harrowing: http://www.bbc.co.uk/news/uk-13548222

Harold we here in NB (Fredericton). Have to, start fundraising for a facility of our own. Similar to Stars for life in PEI. There are younger parents out there who may not know it yet. But their lives are going to become very full of Autism. Perhaps to the point where they themselves are the"hired" caregivers for multiple clients in one of these facilities. It's clear to me that this is quite low on political radars. The only way's gonna be to get er done ourselves and I do not think it is out of reach. My two are both severe and they are only 2 and 4 years and this is all I can think about so I can imagine what you and others with teenage and adults to look after are going through. I want to help but have few resources. But hell this is Freddy and there's scads of cash here. Let's get goin. We can do it.We have to do it. Let me know what you think.

I actually saw someone write that autistic kids would be more self-sufficient if we just "trusted" them. Parents nowadays hover too much over their children. Evidence? What evidence? This isn't about truth! It's about what I want to believe!

Someone else on this blog (can't remember! Sorry!) made the brilliant observation that NDs live in the here and now. That's certainly true, but at the same time, they are very much focused on a vague future somewhere far down the line when we will have all the support services needed for all people with disabilities to live in their communities.

But when you ask them when this Utopian vision will be achieved, they always say they don't know but they're working on it. Well, at some point, before autistic children become autistic adults, it needs to be DONE. They seem to think they have an infinite amount of time before reality sets in, and they don't. At the same time, they spend much of their lives dreaming about a future that likely will not and cannot exist.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.